Jacob's diagnosis of Juvenile Rheumatoid Arthritis at
age 5 until present day. The everyday journey of living
with a child that has a chronic illness.

Tuesday, May 19, 2015

MAY 2015. It has been a year since I last updated this blog. Life goes by and time moves on. Jacob is now 16 years old. He has walked this journey of Juvenile arthritis for 11 years now. It is part of his life. As he has gotten older the challenges of being a teen with this disease has been tough. To be honest he is really sick of dealing with everything that this disease has brought. He is sick of doctor appointments. he is sick of medicine that makes him feel awful and most of all he is sick of always being in pain. I can't say I blame him. Being a teen, he is hoping to get a job soon, but he worries that he will be in pain when working. The problem with jobs for teens is that they all seem to require being on your feet for an extended time. He has intense pain in his heels when he stands for long and I am not sure he will be able to do this. We also worry that sharing his medical condition with a prospective employer will be not help his chances of getting a job.

So what is going on with his JA at the moment? Well he has completed 2 1/2 years of Remicade and Methotrexate therapy combination. His eyes are clear at the moment, off all drops. His joints on the other hand are not doing so well. He still complains of pains here and there. His back, hip, toes, fingers etc. He is supposed to be getting Remicade every four weeks , but he has not been very good with keeping the schedule. There has been some days when he was supposed to go in for his treatment and he has refused to go. Trips to the hospital have been tough for him. What kid wants to go lay in bed for hours in a hospital to receive medication so you can be a kid? After a few appointments missed and the emotional toll this has taken on him and myself, I requested to have his Remicade infusion at home. The hospital room moved to our home! This past week he had his first infusion at home. It went perfectly! All of the supplies were hand delivered the day before. I can't believe how much stuff came. The Remicade was interesting. It was in 9 small vials. It needed to be mixed with sterile water and infused over 2 1/2 hours. A very nice infusion nurse came and did his treatment. She was over for HOURS. It's still such a long process. He took his premeds, Tylenol and Hydrocortisone, then waited for the numbing cream to work, placing his IV then blood draws, then the med infusion, then finally we had to watch for a reaction for 30 minutes after the infusion. We are relieved all went well at home. Jacob will continue to have the infusions at home as long as needed every four weeks and he will continue to see the eye specialist and rheumatologist every 8 weeks.
Well that's the update for now! PLEASE PRAY FOR A CURE so that the 300,000 children living with this disease can live pain free.

Jacob

Uveitis info Website

Jacob's story

This blog is about my son Jacob. Jacob has Juvenile Arthritis. He was diagnosed soon after he turned 5. He is now 13 years old. His journey started with me noticing a limp and a swollen knee. We were referred to a pediatric rheumatologist soon after. Initially, Jacob just complained of his knee hurting and being stiff. He received cortisone injections in May of 2004 and was weaned off of the Naproxyn he was on, soon after. All was quiet with his arthritis until January of 2008 when his knee out of nowhere was swollen again. He had some problems with his fingers and ankles as well. He was started back on Naproxyn and scheduled for a eye exam. At his routine eye exam he was diagnosed with uveitis. Uveitis is a eye disease that is caused from Juvenile arthritis. Jacob sees a uveitis specialist in Cambridge, MA every 8 weeks. His eyes have been cell free since June 2008. He was treated with the combination of Methotrexate 17.5 mg and Humira 20mg every other week. He has not been on steroid eye drops since the springtime of 2008. Beginning in the summer of 2010 we began to taper the methotrexate. He began to take it bi-weekly. He was tapered off the med completely as of January 2011. His joints have remained relatively quiet. This past February 2011, he was found to have some stiffness/inflammation in his hip. He also continues to have a couple of swollen toes as well. He is pain free at the moment and continues to take only Humira for meds. Jacob is considered to have Extended Oligoarthritis.UPDATE: July 22, 2011 An MRI confirms arthritis in both hips. Humira 40mg will be given weekly. He has no pain in his hips. But is having pain in his heels.Update: December 2012 Back on "Humira. Eye flare up, knee swollen and MRI confirms again arthritis is active in his hips.Update: Feb 2013 Failed Humira. Joints and eyes flared and he isn't responding to Med. Started Remicade Feb. 1, 2013.